There are about 2 million people in the United States living with a Congenital Heart Defect (CHD). Just recently, we reached an important milestone: Slightly more than half of us are adults. That is a pretty impressive statistic. When I had my first operation in 1967, the odds were 50-50 that it would allow me to survive for any length of time. (Of course, the odds that I would survive without the operation were zero.) On average, 90% of children undergoing a heart operation today will reach adulthood.
Even though CHDs are the most common birth defect, it is still rare enough to affect only about 1 out of every 125 live births. People with my defect, Tricuspid Atresia, are rarer still. One person in 10,000 is a Tricuspid.
Growing up in the Internet-less 70′s and 80′s, I only saw other CHD kids at the Cardiologist’s office. I’m sure there was some kind of yearly get together or an ongoing educational programs for all the Cardiac Kids – even got a couple of fliers about them – but those of us who lived in small towns were on our own. And if you wanted to learn more about your defect, you either went to the library or asked the doc at your next appointment. (Hint: Small town libraries usually don’t have access to major medical books.)
So I was used to doing things “on my own” when it came to heart care, and almost all of the CHD groups I found online were oriented towards children. I joined a couple but soon dropped out. Certainly I didn’t mind answering a parent’s question as best I could, but I had questions too, and none of the CHD parents had an answer for me.
I was sitting in my Cardiologist’s office one day when someone asked me “Have you ever heard of the ACHA?” I had not, who are they?
“The Adult Congenital Heart Association,” was the answer. “We’re a group of adults who had heart surgery as children and have grown up. We have get-togethers, conferences, a website and a message board to ask questions. You might want to check us out.” She slipped me a brochure. It did look interesting, so I stuck the pamphlet in my pocket and looked up the website when I got home.
This was the group of people I was looking for! A group of adults – mostly young, but open to all ages – who had taken control of their health care. I thought that I knew my heart pretty well; but compared to some of the other members, I knew next to nothing.
Yet no one is looked down on. We’ve all “been there and done that” (and got the t-shirt to prove it!) so when a new member joins and asks the most basic of questions, he/she gets the information they are seeking. Sometimes they get a bit more knowledge than they want, but if you need to know, just ask.
The ACHA is actively working to expand the pool of Adult Congenital Heart Defect doctors and has lobbied Congress to fund a National CHD Registry. The creation of a large database of CHD patients would lead to more organized and focused research into the causes and treatments of Congenital Heart Diseases. Even if all the Registry does is reduce the number of medications we must take, the savings would be phenomenal. We’ve lobbied Congress twice on this issue with limited success – Both the House and the Senate approved our request, but we couldn’t get White House approval.
If you are an adult who has a Congenital Heart Defect, we want you to join us. But more than that, we want you to see a doctor who specializes in the care of adult CHDers. Give him or her the chance to help you stay with us for as long as possible.